Open I am looking for people in the UK who could share their insights and experiences of education

“I feel like a ghost.” How included to children and young people with chronic conditions feel in their education, and what can we learn from their lived experiences?

As a parent of a young person with ME/CFS, as well as a special education teacher, I bring these two aspects of my identity together for my PhD project, ethically approved by the University of Plymouth in the UK.

Anecdotally, children and young people with a chronic condition may experience difficulties in:

· Missing school, having no energy/time to catch up

· Falling behind peers, while still being academically able

· Losing friendships, connections with peers

· Being administratively excluded, e.g. not receiving letters

· Feeling a lack of belonging, “like a ghost”


This research is guided by a Lived Experience Advisory Panel, made of up of young people who have chronic conditions themselves. What works well for the inclusion of this group of young people in education? What are the challenges, for schools/educators, for the young people themselves, and for their parents/carers?

I am looking for people in the UK who could share their insights and experiences. You may be a child or young person with a chronic condition; you may be a parent/carer of one (or perhaps more than one). Or you may be someone who works in a school or college and who supports or teaches a young person who misses days because of their chronic condition. Your collaboration in this research is valuable!

https://app.onlinesurveys.jisc.ac.uk/s/plymouth/i-feel-like-a-ghost

Please feel free to share with others who may be interested in collaborating too.

 

I have no idea what the present school system is like, but I think it might be helpful to include home schooling and internet-based learning options.

 

Thank you, yes I am hoping to include all forms of education so am using the word in its loosest sense. Here in the UK home-education is growing at quite a pace, so I feel it's important to offer people in this community the chance to tell their stories. If you know of anyone who may be interested in taking part please feel free to pass on the info

 

I agree, it would be great to be able to do this. However, my PhD is in Education and the ethics allows me to work only with those who are of compulsory school age in the UK - so 5-18 (or up to 25 if they have an Education, Health and Care Plan). My intention is that some good comes of this study - for example through being able to offer training to schools/education settings, local authorities, multi-academy trusts etc. - so that fewer people coming through have the disruptive experiences that you describe. If all goes well, I may be able to extend this work beyond the qualification and learn retrospectively with a wider age-range.

 

Does your remit cover Scotland?
It's a very different system here - compulsory up to 16 and no EHCPs

 

Indeed, I think it would be really valuable to include the views of adults looking back at their childhood experiences. I was too traumatised as a child with ME by my treatment by the system, and too much in survival mode, to have participated in a study like this, never mind to have given any useful answers.

Tymes Trust are well-placed to advise on working with children and families who have had extreme negative experiences, but children and young people who for example have been subject to aggressive measures by schools, hostile interventions by social services, investigation of caregivers for FII etc. are likely to be very cautious about speaking to researchers and may have difficulty articulating their experiences. Adults’ reduced vulnerability to harmful coercion by authorities may make it easier to make sense of and speak about what happened.

 

This is an important study and I wish you well .There needs to be some appreciation of context though.

It would be interesting to note any variance in response by area, particularly areas where there are paediatric clinics.
School attendance has been a key metric in paediatric research without accepting the nuance that ability to function at school may be reduced or non existent in a school environment or even by getting to school.
Such is the power imbalance that many kids are made worse by trying to participate .

FII accusations are often triggered by poor school attendance , and for many families, it's Hobson's choice.

There are online alternatives, however these can be difficult to access if you can't self fund.

The lack of knowledge , and the dire lack of understanding and poor advice from medics, ( and specialist clinics have played a hugely negative role in this sphere ) has a huge impact.

Tymes Trust would be worth talking to.

 

There's a group called Not Fine in School for parents of children experiencing exclusion from education for a range of reasons, including health conditions - they might be able to give you some contacts. They have a Facebook group just for parents and carers which has 60,000 members, but their main website is here https://notfineinschool.co.uk/home

 

Great question! My experience is in England and Wales, but I'd very much welcome collaboration with people in Scotland and NI because I'm sure we could all learn from experiences far & wide. Feel free to email me if you'd like to discuss this further: jen.shute@plymouth.ac.uk

 

A wonderful organisation! They are on my list of possible 'gatekeepers' so I'll be sure to get in touch with them. Thanks very much!

 

Hi, thank you for raising these points.

As you've mentioned, geographical context would definitely be of interest, especially as Local Authorities can vary significantly in their approaches.

I also agree with your point about attendance; something we experienced directly as a family, although fortunately not to the point of FII accusations for us but this is indeed something that I include in my Lit Review and expect to come up.

Diagnostic methods (or lack of) is also an issue - for ME/CFS as well as for other conditions that may be represented - and I'm expecting this to be a factor in the difficulties schools seem to have in their approaches.

Finally, yes, I agree that the Tymes Trust is a great organisation with useful resources etc.

Thank you again, you sound like you have direct experience too - I hope you'll consider being involved, if appropriate!

 

Hi, and thank you for sharing your insights - I'm so sorry to read that you had such traumatic experiences and really hope that you're doing okay.

You're right that I need to tread lightly. The study has been designed to be as accessible as possible, to take into account the time and energy of all, as well as to be mindful that this is a sensitive topic. For this reason, we'll be using mixed methods, and chunking communications (in preferred modes) and activities to do all possible to prevent overwhelm. I am also guided by a Lived Experience Advisory Panel made up of young people who have chronic conditions themselves.

Unfortunately no research is perfect though, and I'm aware of the limitations of this study already - some of which you mention. I guess the best way to see this is as a first step towards collaborative research with this community, something to be learned from (to inform practice and policy in education) and built upon for future studies.